Writings, recipes, and links about parenting a dairy-allergic child and her siblings

Wednesday, April 22, 2009

Help Us, Internets!

Cathy wrote to me the other day about her six-year old son's newly-diagnosed food allergies. She is, understandably, overwhelmed and could use whatever advice you have to share:

I have always had an idea my son had a dairy allergy that manifested itself through chronic constipation. I nursed him for 10 months (I do not drink milk myself). He was a colicky baby though. Once I weaned him and put him on regular milk-based formula the constipation began. He started on whole milk at 12 months and holy cow! He has been on Miralax off and on since then. He ended up needing surgery for a hernia caused by the chronic constipation last August. My pediatrician assured me over and over again that its a boy thing (the constipation). She said with a true milk allergy the symptoms are usually diarrhea.

Fast forward to now: his seasonal allergies were out of control. We had him on so many medications I was very uncomfortable. My pediatrician FINALLY recommended allergy testing. We did the skin test on April 8, and sure enough his list of allergies was quite long. All outdoors basically (trees, grasses, weeds), dogs & cats, dust, mold, and a host of food allergies which include: MILK, SOY, CITRUS, TOMATOES and CORN (all his foods scored a 3 on a level of 1-4 with 4 being the worst). He was also found to have a pretty bad sinus infection. The treatment plan so far is to fix the sinus problems with an antibiotic and a decongestant and nasal spray. He is on a 100% milk free diet. The allergist wants to see if his constipation improves once the milk is out of his diet. If not, then we will start eliminating the rest of the foods. The hardest is going to be soy and corn. We have already cut out tomatoes and citrus.

My son is almost 6 so obviously he knows he is missing out on stuff. I have been able to find yummy treats for him that are dairy free. What do you do about birthday cakes? Do you feed all your kids the same stuff or do your non-allergic children eat "regular" food? Where do you grocery shop? What about eating out? I just feel very lost and confused. I am reaching out to anyone who can guide me. When I got home from the doctor I was so overwhelmed. There was so much information I heard from the doctor that my head was literally spinning. I felt like for four years I had failed my son. I called his office the next day and asked where to begin shopping and the receptionist pulled his chart and laughed and said "Oh he can have jello I guess...no wait that has high fructose corn syrup"-- the nurse I spoke to later was kind and told me nothing he has will cause him life threatening injuries/illnesses and that I need to take a deep breath (I definitely did!).

Anyways, if you read all this ...thanks! I am just looking for some guidance.

I have already given Cathy a few suggestions. I have also told her NOT to listen to the nurse who said "nothing he has will cause him life threatening injuries/illnesses" because sadly we all know that isn't true. Her son's next appointment is in May, and she is compiling a list of questions for the doctor.

Now it's your turn! Please help this new allergy mama with whatever information and support you can share in the comments below. Thank you.

14 comments:

Sarah,Thank you for posting this! Cathy's story sounds just like mine except we don't go for the allergy testing until May 4th. My daughter is just shy of 7 and has been dealing with chronic constipation since she was 6 months old. Our current doctor has her on miralax but that's not helping very much. I've noticed it gets worse when she consumes dairy-heavy foods and we try to limit those. I brought up allergy testing to our ped and he said "it wasn't neccessary, and after all, if she's allergic to milk (or wheat) what will she eat?" So not helpful. I went ahead and booked my own appointment with an allergist but I've been freaking out as the appointment grows closer because what if the doctor thinks I'm crazy? After all, the only symptom we hear a lot of in regards to dairy allergies/intolerances is diarrhea. So, thank you again for posting this!

So, after all that, and to answer Cathy's question; I try to serve everyone the same thing. While we're not totally dairy-free (yet)I buy soy milk and that's what everyone drinks. I buy soy or rice ice cream. For meals at home I only serve things my daughter can eat - there are enough dairy-free alternatives out there that nothing seems to be missing. For birthdays at school, I followed Sarah's advice on the cupcakes to be kept in the school freezer and that's working out quite well. I shop mostly in the small organic aisle at the local grocery store (we don't have a Trader Joe's or Whole Foods around here). Target has a pretty good selection sometimes too. I also do a lot of cooking and baking from scratch so that I know exactly what we're eating.

I'm so sorry, Cathy. I had a very hard time dealing with the diagnosis too at first.

I am in a slightly different situation, since my son is young and he is our oldest, but here is what we are doing. If Gabe does not outgrow his allergies (milk, soy, eggs, peanuts, tomatoes, and now we think citrus), the entire family will eat this way. I am going to treat my younger son as if he has the same food allergies and they will basically eat the same meals and snacks. I have found that in play group situations it is often hard to keep unsafe foods and sippie cups away from Gabe without hovering over him 24/7, so it is easier just to avoid having the foods out at all.

Also, please don't listen to that nurse. My son has been in the emergency room and nearly died from drinking milk. He has also eaten foods for months without having a reaction, or had a very mild reaction, and then one day out of the blue ate the same thing and had a severe one. You just never know with these things.

I actually view Gabe's food allergy as a blessing in disguise. I know we are not supposed to be eating a majority of the processed and fast foods that our society lives off of. Having an allergy eliminates those foods as options and gets you back to healthy eating - fruits, veggies, meats and grains. It takes a lot more time and energy to make the food, but it is so great for your family's overall health to be eating this way.

Let me know if I can help at all. Our children have very similar allergies. I am also suspecting corn as an allergen for my son, and have scheduled an appointment for next week to have a skin test of every common allergy food.

Your story sounds so familiar and we felt very overwhelmed at first. Originally my son had to avoid dairy, eggs, peanuts, tree nuts, wheat, soy, oats and corn. Not an easy task!

Fast forward almost 8 years and he's only allergic to dairy, eggs, peanuts, tree nuts and maybe shellfish. I created a website with many resources of food and support. I have a section with great recipes for cakes, cookies, main dishes, etc. Check it out at www.foodallergyassistant.com.

There is a great support network on the Internet. Feel free to contact me if I can help or point you toward other support. You are not alone!!!

I've got a GREAT dairy free chocolate cake recipe. I also make them into cupcakes and they freeze beautifully. I have had people - whose children have no food allergies - beg me for the recipe. They can't believe it's dairy/egg/nut free. Enjoy!

In large mixing bowl, combine flour, sugar, cocoa, baking soda and salt. Add water, oil, vinegar and vanilla. Beat with wooden spoon or wire whisk until batter is smooth and ingredients are well mixed.

Pour batter in prepared pans. Bake in preheated 350 oven for 35 minutes or until inserted toothpick comes out clean. Let cool in pans for 10 minutes before turning out on wire racks to cool.

Frost when completely cooled.

Chocolate Cupcakes

Prepare batter as above. Line cupcake pan with paper liners. Fill almost full and bake in preheated oven for 15 (keep an eye on them) minutes until done. Let cool on wire racks then frost.

Cathy, take that deep breath and get used to reading food labels. Your son and other children can all eat "regular" food just regular food without dairy. Our whole family which is me, hubby, and cherub eats dairy free at home. Go to www.kellymom.com and you can download a handy list of "hidden" dairy ingredients that you can fold up and put in your purse when you are shopping. Take it one step at a time. You can do this!!!

My son isn't milk allergic, though we treated him as if he was for his first year, but I was a milk allergic kid, and I still am very allergic.

My mom found that store brand cake mixes are often dairy free and that vegetable oil can often replace butter when added to the dry mix. My mom bought a lot of shaped cake pans, they were cool, even if they weren't those fancy ice cream cakes! Now they also make those cute cake toppers that you can take off the cake and your kids can keep them.

I knew I missed out on things, and sometimes it did make me sad, but it didn't ruin my life! We also didn't have dogs after my little brother was born because he was allergic I suppose there are just some things in life you may have to live without.

I think all of the above advice is great! Just hang in there, take it one day (or meal at a time), and you will get through it- before you know it you will be a pro at this. And it is okay to give them the same thing over and over until you figure out a new thing to try. It is a learning process and with multiple allergies it can be complicated and overwhelming. Perhaps you can ask around and see if other moms in his class have kids with food allergies? I always found such great support online, but in person also helps, especially in social functions.

It really does get easier, and like Food Allergy assistant said - it's easy to find a support system.

When I first found out about my boyfriend's whey allergy I was so confused and lost. It seemed like every label I picked up had it listed as an ingredient. But, once you educate yourself and change how you shop and prepare food, it's almost like a second nature.

Other food allergy sufferers and mom's have tips and sites all over the internet, so definitely suck up all of that information. There's books, companies, stores, resources, etc. all at your fingertips.

I recently found a grocery store about a 5 minute drive from our house that is dedicated to providing natural allergy free items, from food to linens to cleaning products. Research around your area, and you might be surprised what's in your own backyard!

Something I have run into with everything from chocolate to crackers to teething bisquits... the same product in different parts of the country and in different size packages can have different ingredients. Or they just change it because they feel like it. Do not ever stop reading the labels.

You can do this and it is not your fault that the diagnosis was so late in coming.

Here are some convenience treats that we have that are dairy free and easy to find:1. Oreo cookies - shockingly these are dairy free. 2. Duncan Hines cake classic yellow cake mix (also Blueberry Muffin mix, Chocolate Cake AND Brownies) Soy milk works well as a substitute for the milk when it is called for. 3. Kashi Fruit Bars (or cereal bars). These are a lot like the Nutrigrain bars that the kids love but do not have dairy. They do have A LOT of other allergens (no nuts, but seeds) so read carefully.

I know that it seems really daunting to eliminate dairy but you will get used to it. One thing I will definitely warn you about is Soy Milk, Soy Yogurt, and Soy Ice Cream. Be careful with these as many of them contain dairy (which I found surprising). We like the Whole Soy Company and SO Delicious. O'Soy from Stoneybrook Farms does contain milk ingredients so stay away from that brand.

Good luck to you in navigating your grocery store. You will be amazed at how good you get at it in just few short weeks.

Other helpful things for dealing with food allergies:1. Join a support group in your area (this is really helpful when you want to find restaurants or other local places that are food allergy friendly).2. Make a list of acceptable foods for your child. Include the brand and flavor. Bring this list with you when you travel to a relative's house because it will make shopping easier on everyone!

I have a niece who is allergic to milk, soy, citrus and fish. We have a difficult time finding stuff she CAN eat, but consider it lucky that your son can still eat wheat- because that is one of the trickiest ones to work around!

Obviously there are lots of milk substitutes out there these days that are rice based. Our family doesn't have allergies, but we use rice milk instead of regular milk for just about everything.

I know that places like Whole Foods have sections that have dairy-free foods, you just have to check everything for soy, obviously...

I am a new allergy mama myself--baby was diagnosed at 3 months old (in December 2008) with milk allergy. Really appreciate all this information! Do kids outgrow this kind of allergy or not? My brother supposedly did, but I just wonder. I don't know what we will do if I have to cut all dairy out from my oldest daugher!

Hi Cathy. I'm sorry to hear about your son's diagnosis. I know it doesn't seem like it now, but it will get easier. Once you figure it all out and as times goes by you will get accustomed to what you need to do and how to manage. It's never easy, but it does get easier. In our house, we are 100% dairy free, but for us that was an easy choice since we have only one food allergen.

Also - follow your instincts. If you are unsure about a manufacturer or food, do not give it to him.

Sara - yes, most kids (80%) will outgrow a dairy allergy. But...it used to be most outgrew it by the age of 3 or 4, but now that 80% is by the age 18, so they are becoming more persistent.

It's all about comfort level. For us, taking dairy out of our house made it easy for us. It got to the point that if we ate dairy, it was so stressful to clean and watch what we touched (our daughter is also contact-reactive). So it wasn't worth it - we never enjoyed daiy even when we had it. You will adjust, it just may take time. There are also so many substitutions for dairy. Dairy is one of the easiest foods to sub for. The only substitute I have yet to find (a decent one anyway) is cheese. I miss it.

About Me

Sarah (Nowheymama) lives with her husband, Scott, and children, Katherine, Eli, Helen, and Graham.
You may email me at nowheymama at gmail dot com if you wish. I also write at Go Dairy Free.
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